Stories about our son Ben, his disability and our family. Ben is 10, loves stories and is physically disabled. I am learning to be his ally.

Month: December 2018

Ben is now 9! I just reread my last proper blog about Ben’s birthday, when he turned 7, and much of it I would like to repeat: I can’t believe he’s 9! He’s so tall! Well done us for 9 years of parenting!

A lot has happened in the last two years, though in many ways things for Ben and us can seem similar – the appointments, the physio, the school, his interests. When you are there every day you don’t notice your kids growing up, until you catch sight of them across a playground and cannot believe that massive child once lived in your (my) womb.

Two years ago I said Ben had:

“made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.”

That was true then. It is also true now: what I want to tell you on Ben’s 9th birthday is that he’s got so much better at using his eyegaze computer (and lowtech communication book). That he often knows exactly what he wants to do, will choose the story he wants and navigate through it, that he goes into and then exit activities when he wants. That he uses his communication software to say things that are entirely appropriate.

Some of what I want to say sounds so similar to 2016 that it begs the question of what what exactly has changed since he was 7. The complexity of the way Ben learns and communicates means progress, or development, is hard won. It can be inconsistent and hard to capture precisely. I look back on Ben two years ago and I know that he wasn’t as good at navigating around his communication device as he is now. That isn’t to say he wasn’t doing those things before, but perhaps I did see small improvements and leapt on them. I know more now, I expect more of him now. In some ways Ben is doing much the same stuff he was doing two years ago, and in other ways he’s made wonderful progress.

The timescale of helping Ben learn new skills is difficult – it can take a long time. It can be hard to know whether he is improving or learning, and therefore whether you are doing the right thing. It can feel pointless to continue working on something that appears to be having little impact. We knew that communication was a long term project, probably lifelong, but you still can’t help hoping that there will be some kind of miraculous progress at some point.

Which of course there isn’t. But there is slow incremental improvement, a bit more nuance, a little more unprompted communication. It is all subtle and understated. We are talking about complex skills, involving deft eye control, motor planning, memory and language knowledge. It’s difficult to articulate, but I’ll do my best.

Two years ago Ben was using a high-tech eyegaze device that we had bought ourselves – it was a laptop with an eye tracker connected via USB. He could only use it when sat at a table. For the last 18 months he has had an NHS-funded eyegaze device which mounts to his wheel-, school- and home-chairs. He is still quite light, so his weight isn’t sufficient counterweight when the device attached which means it can’t be mounted all the time (e.g. on uneven ground), but he has it mounted on his chair at home and school for some portion of every day. For the last year he has also had additional educational funding so he has two hours of 1:1 time each day when an adult supports his communication specifically – modelling how to say something on his device, helping him find specific vocabulary, helping him use his device to do school work.

These developments have given him more time to practise and more opportunities to find pathways within his communication software. Sometimes progress doesn’t look how you imagined: over the summer he used all of this input to navigate out of his communication software every time I tried to talk to him using it. Every single time. This was disheartening – isn’t supporting his communication meant to mean he communicates with us more?

To do this he was adeptly selecting three different cells in different positions on three different pages in order to exit his PODD communication software and then go to one of the stories on his device – clearly communicating that he didn’t want to talk to me, he wanted to read (and be read) a book. So I had to admire his determination and skill, and respect his wishes – to force him to talk would be as inappropriate as trying to make a verbal child speak to you.

Since the summer he has chilled out in this particular regard, and will now talk with his device. It is mostly in the context of a specific conversation rather than unprompted speech. It’s getting increasingly relevant and timely, with some ‘scaffolding’ provided by his communication partner.

For his birthday Ben’s aunt Rosie sent him some incredible shoes with lights in the soles. Once we’d opened the package and put them on, we talked about them with his device. I went to the homepage of his communication software, where there are various categories of words, and went to Special Events. He then chose ‘happy’ and ‘birthday’, and then I selected ‘present’. I said ‘this present was from…’, and I went back to the home page and into the People folder, where Ben selected ‘Rosie.

I said, ‘yes, from Rosie. And look what she’s bought you!’. I couldn’t remember where exactly to find the word but went into the ‘Clothes’ page. I then got distracted by trying to stop Molly inspecting Ben’s shoes so closely that she risked being kicked in the face. Then I heard Ben, via his device, say ‘shoes’.

He had gone to the folder called ‘shoes’ and then had ignored the cells called boots, thongs (it’s Australian software), AFOs, sandals and trainers to select the one that said ‘shoe’.

Ben knew what I was talking about, he knew exactly which words we needed, and he found them with his eyes by navigating between pages, selecting the correct one of 18 cells on the screen, repeatedly. It’s functional, practical, appropriate communication. It’s everyday speech, only it has taken years of practice and support for this to become close to our everyday.

It’s one step further forward for a boy who has spent nine years working so hard to make himself understood. He’s 9! I’m so proud!

Follow Blog via Email

Enter your email address to follow this blog and receive notifications of new posts by email.